Daily Archives: 28 October, 2010

Guest Post: Stuck and tired: How universities are failing disabled students (like me)

Diane Shipley is a freelance writer obsessed with feminism, US TV, memoirs and pizza. She writes about those things and more at her blog, the imaginatively-named Diane Shipley Blogs (http://blog.dianeshipley.com) and is almost always on Twitter (username: @dianeshipley).

You’re intelligent, personable, and get good grades. It might look like higher education is a given.

But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.

Last year, I tried to finish the degree I dropped when I got ill back in 1998. The disability services department at my new university contacted me the summer before I started my course, asking what extra help I would need.

I had never been a student with disabilities before, so I couldn’t anticipate all the challenges I might face. But the system for reporting those I was aware of seemed doomed to failure: a disability advisor emailed my department in the first week of the semester to advise them that I needed my seminars and lectures to be accessible. Inevitably, this was too late. One of my lectures was in a building with a lift that was almost always out of order, leaving me the choice of missing out or making myself ill. And my registration experience was disastrous.

Registration and enrolment were in two separate buildings nowhere near each other. As no buses ran in that direction, this meant a fifty-minute round trip on foot, well beyond what I could cope with. So I emailed the university to explain this, asking if I could register and enrol online, instead.

Here’s where I point out something that should be obvious but seems not to be: when disabled students express a preference, it shouldn’t be brushed aside in favour of what administrative staff would prefer. Being assertive can be very difficult, especially in situations where someone has power over you. Expressing one’s needs can also be embarrassing, as many long-term illnesses and disabilities are stigmatised. It’s an issue that deserves to be treated with sensitivity, but too often isn’t.

Instead of granting my request, a member of staff from registry services suggested I meet her late in the afternoon, instead. Because her address was at the end of her email, and was somewhere I could access by bus, I agreed. But when I went to her office at 5 PM on registration day, the shutters were closed. Tired, upset, and alone, I vented on Twitter: “I don’t think this university cares about disabled students.” Then I called my mum in tears and she offered to leave work and drive me to the building where registration was taking place. I finally made it and explained the mix-up to one of the staff, who said someone there wanted to speak to me.

The head of registry services strode over and introduced herself, a stern expression on her face. She then shouted that I couldn’t say what I liked on Twitter without giving them “right of reply” and that the university did care about disabled students. “I’m fully conversant in equality law,” she snapped. When I mentioned the mix-up over where I was registering, she said that perhaps I should read emails more carefully in future.

She wasn’t wrong: I could have double-checked. But in my defence, starting university was an overwhelming undertaking, and confusion and anxiety are big parts of my illnesses. I had also made the mistake of assuming that no-one would suggest we meet somewhere I had specifically said I couldn’t access.

I was finally able to register but because of the delay, I couldn’t get into the student intranet until two days later, so the seminars I wanted to sign up for were full. This meant that instead of organizing them at times to suit my illness, I had to take whatever was left. When I contacted my departmental disability liaison officer to ask if I could be squeezed into more convenient seminars for a couple of subjects,  he demurred, and I got the impression he thought I was trying it on. I didn’t have the energy to argue that this seemingly small issue was essential to the management of my illness.

As I thought I would, I struggled with my schedule.  Ten hours of class time isn’t much, but I hadn’t counted on the extra time I’d need to walk to lectures (and then sit down and catch my breath). In retrospect, I needed to take taxis to my classes. But I was reluctant to organise this because one of the disability support staff told me that some taxi drivers were “funny” about short journeys.

But my biggest challenge was the fire alarms, which went off once or twice a week. We would traipse out of the classroom, walk down three or four fights of stairs, stand around for ten minutes, and then go back up again. I had no idea what disabled students were supposed to do, and didn’t know who to ask, so I just struggled on, my muscles spasming from pain and stress.

I know what some people will think: maybe I was too ill to be at university in the first place. But I had a good reason for attempting it: money. In England, if you’re on a full-time course, you are entitled to loans, grants, and bursaries, which add up to (just about) enough to live on. A part-time student is only entitled to £225 a year. So I took a risk.

It’s a risk that failed. Although I could cope academically, physically I was falling apart. After five weeks, I suffered a severe stress-induced relapse and the university recommended I take a leave of absence. This meant I wouldn’t have to reapply if I felt well enough to return, but I wouldn’t be entitled to student finance or disability benefits during this time, either. I only scraped by thanks to my overdraft, a little writing work, and my supportive parents.

This summer, I had to decide whether or to go back. I decided against it. I didn’t feel well, and I didn’t feel welcome.

I don’t think my experience is unique: I suspect it is more common than universities realize. The way I was treated is part of a much larger problem: how we, as a society, view people with disabilities. We need to stop being surprised when someone has special needs, and there needs to be a socially acceptable way of saying “I can’t do that,” or “I need more help”, especially in educational institutions and the workplace.

Policies like the British government’s plan to reduce the number of people claiming disability benefits (without regard for the number of people with disabilities) perpetuate the sadly still prevalent belief that those of us who have disabling illnesses which are not terminal or immediately visible are lazy, when nothing could be further from the truth.

The fact is, students with disabilities need better support. An attempt to understand and cater to students’ individual needs rather than just paying lip service to the idea of equality would be an excellent start.

Recommended Reading for 28 October 2010

Readers beware! Not every link is a guaranteed trip to a safe space, and the commentary is not necessarily the opinions of myself or others here at FWD/Forward, but have been included to provide you with a variety of reading that is possibly relevant to your interests (or perhaps to mine). The comments in the blog posts or mainstream news articles you will find below may or may not be triggering to various -isms, and so I would caution you, gentle readers, to proceed with the greatest of caution as you click through away from this page.

Yahoo! News: Nurse error left man brain-damaged

Mr Merrett was aware of the mistake that had been made before he lost consciousness, unable to speak. He can be heard on the film urgently clicking his tongue as a warning.

Ms Aylward tried to resuscitate him but it took 21 minutes for the machine to be restarted by paramedics, leaving Mr Merrett with serious brain damage. He had been nursed at home since 2002 after a road accident left him paralysed from the neck down.

In a strange land (sent in by reader Deborah Russell): The slow reveal

That’s one of the things I like about this book. It doesn’t try to pretend that illness is easy, that everyone can just take the pills and be happy. Kate de Goldi’s characters cope, but there are costs for each of them too. Above all, there are costs for Francie. She has found a way of living, a way of managing, a way of being… content, even if not happy per se. But there are costs. Fancie is no super-crip. She’s just an ordinary woman, who copes as best she can with the way her life has turned out.

The Living Artist (sent in by Heather Freeman): Withdrawal

I see my doctor once a month for a new prescription, because she won’t give me one with refills. (To be honest, I’m unclear if this is her policy, the hospital’s policy, or state law. My impression is that it’s the hospital.)

Last month the one person in her office who knows how to work the computer was out, so I had to have my husband call in to make my next appointment. By the time he got through to the office (which is incrediblyhard to reach by phone) their next available appointment was 6 weeks after the last one. He pointed out that I would run out of my medication before then, and they said they’d see what they could do. Of course we then heard nothing.

Feminists with FSD (sent in by reader Astrid): In defense of “Dysfunction”

Since I have FSD, I have vested interest in learning more about it – what it is, what treatments are or aren’t available, how it impacts individuals’ lives (if at all,) etc. It’s not just reading though – I’ve talked to and received feedback from women who themselves have FSD in one or more forms. I’m especially interested in how FSD is perceived and what people say about it! It’s meta, and its fascinating. So what are people saying about it? When I read about FSD, I notice a few familiar themes pop up repeatedly…

HealthCanal.com: Controversial Law Improves Care for Serious Mental Illness

Currently 45 states have involuntary outpatient commitment laws, but only a handful are designed with prevention in mind. Kendra’s Law is intended to identify and address at-risk behavior that may trigger the need for hospitalization.

Amid criticism that the law may violate patient rights by mandating treatment, the New York State Office of Mental Health commissioned an independent evaluation of the implementation and effectiveness of the program.

Gentle Readers! Always feel free to send your links for a Recommended Reading to recreading [at] disabledfeminists [dot] com. Be sure to include how you would like to be credited for your great find, and a link to any website you want affiliated with yourself.

Politicians care so much they make their message nonsense

Like a lot of people, I signed up for automatic emails from the various political parties in Canada. Because I live in Nova Scotia, the main federal parties that run here are the Conservative Party, the Green Party, the Liberal Party, and the New Democratic Party (often just the NDP). (If I lived in Quebec, I would also have the option of voting for the Bloc Québécois federally.) I dutifully signed up for all four of these parties, so I could be informed about the issues they think are important.

One thing that seems to be very important: YouTube videos! Each of the parties maintains their own YouTube channel, and they stock these channels with videos. Every week or two, I get another email from a political party that really wants my vote (or at least my money), and they often include links to the YouTube channel, or even embedded video. And every week or two, I respond like clockwork, asking them to please provide captioning and/or transcription of the video.

So far, the response has been silence.

I wonder if the reason for this is simply because there’s the new Auto-Captioning service at YouTube, which attempts to automatically subtitle a video a video. Surely this will provide a good working set of subtitles, right?

Ha ha. Ha ha ha.

In alphabetical order, let me show you what the YouTube auto-captioning displays when I try to watch political messages from my current or potential political representatives:

The Conservative Party of Canada:

An image description appears below

Image: Screen capture of a YouTube video, with subtitles that read “You don’t think that’s a whole group called american this country and you have to decide”

Actual quote: Voice Over: “Adopted Britain as his home. Called America his country.” Ignatieff: “You have to decide….” (This advertisement is discussing Liberal Leader Michael Ignatieff’s past.)

Here is leader of the Green Party, Elizabeth May:

See below for image description

Image: Screen capture of a YouTube video, with subtitles that read “we’re on Friday evening breeze through across Canada will gather”

Actual Quote: Elizabeth May “…Where on Friday evening Greens from across Canada will gather.”

I will totally admit the Green example is not as terrible as the others. The Greens don’t have a lot of advertising at the moment. (Non-Canadians, this is in part because they’ve not got an actual member in the House. I count them as a national party because they run in all 308 Federal ridings, and May participated in the Federal Leadership Debate.)

The Liberal Party of Canada:

Description appears below the image

Image: A screen cap from a YouTube vid. Caption reads “the prime minister’s their lives for stroger’s we have a garden”.

Actual quote: “… The Prime Minister is there to inspire us to do our best, and we have a guy who….”

The New Democrats:

Image description is below.

Image: A YouTube screen capture. The caption reads “costs are skyrocketing so why does is Stephen harper dead”

Actual Quote: “Heating costs are skyrocketing. So why doesn’t Stephen Harper get it?”

This is what I wrote in one of my last emails to my MP about this issue:

I know disability and accessibility are things you care about too, Megan, so I hope that you will pass along my concerns to the NDP Leadership: Transcribing and subtitling/captioning of video and audio content is an accessibility issue. Providing both a transcript and subtitling allows for more Canadians to be able to access the message of the NDP. As well, it shows a commitment to accessibility and to including Canadians who prefer or require transcripts and subtitling, for whatever reason. As this is something I believe the NDP values, it would be helpful for the party, at all levels, to provide transcription and subtitling for all the videos that they produce.

Of course, subtitling your video (and providing a transcript) are not only for people who are d/Deaf or hard-of-hearing. They’re also for people who have audio processing disorders, who have difficulties understanding spoke English, who don’t want to turn up their volume, or even don’t have speakers or headphones on their computer. They’re for people who just want a transcript or subtitling because it makes their lives easier today. (For example, I have an ear infection and subtitles are the order of the day.)

Every political party in Canada “cares” about “the disabled”. They really do. Each one has a little subsection of their website dedicated to explaining how they “care” about “the disabled”.

I think it would be awesome instead of telling me how much they cared, they’d show it. And one way of doing that would be subtitling their ads, so everyone can know what their message is.